Submission to the Tresillian Family Care Centres Consultancy Team’s Review of Postnatal Health Services for Families with Infants

August 1995

Introduction

The ACT Right to Life Association is keen to ensure that postnatal health services are adequate to meet the needs of ACT women and their children. This is part of the Association’s broader aim to ensure that the services available are such that ACT women feel no pressure of any kind to seek abortion, that ACT parents feel no need to abandon their disabled children at birth and that adequate support is available for women experiencing postnatal depression and post abortion grief.

The recently released Strategic Framework for Maternity Services in the ACT 1995-1998 states in its underlying principles that “the woman must be the focus of maternity care.” ACT Right to Life believes that equal consideration should be given to both the woman and her child.(1)

Disability and appropriate postnatal care

The ACT Right to Life Association opposes the refusal of treatment to disabled newborns and young children where such treatment can reasonably be expected to be therapeutic and extend the life of the disabled child.

Refusing treatment to newborn and young children where treatment is not burdensome disproportionate to benefit can only be seen as direct discrimination against the child because she or he has a disability. It is not possible, nor is it the role of doctors or the community to determine whether someone has an adequate “quality of life”.

Background

There has been a history of debate in Britain and Australia on the issue of whether to treat or not to treat disabled newborn babies or disabled young children. The debate generally involves children born with either spina bifida or Down syndrome.(2) It is also an area of debate in which the subjects of the debate, disabled people, have not always been given a hearing.

Spina Bifida

British disability rights activist Alison Davis has written of her experience encountering the view that she would be better off dead. “I read in the paper an article … (which) … told the story of a couple who had decided to ‘allow’ their spina bifida baby to die. I read it with a kind of morbid interest, especially the circumstances of her death and the fact that the doctor had encouraged her parents to reach this decision. He had then sedated the baby so she was too sleepy to cry for food, and thus starved to death. He called this the ‘loving thing to do’ because she would have been unable to walk, and doubly incontinent and would, he deemed, have compared herself unfavourably with her able bodied sisters. She would, in short, have been exactly as disabled as I am myself.”

“Three years later I met the doctor concerned, who expressed sorrow at my disquiet admitting I was as human as he was himself, but still defending the parents’ right to choose.”(3)

Paediatric surgeon Dr Robert Zachary explained his experience with one doctor and his approach to disabled newborns. “A paediatrician in Lancashire was describing at a meeting of doctors, nurses and clergymen how he dealt with babies born with spina bifida. ‘I decide’, he said, ‘if it is go or no go. If it is go I get help from my surgical colleagues in the care of the child. If it is no go I tell my registrar to give the baby a good dose of morphia.’ During discussion a clergyman asked if he took the parents into his confidence. ‘Of course I do’, he responded, ‘and they are behind me 100%.’ I interposed and asked whether he told the parents that his registrar would give the baby a lethal dose of morphia. ‘Oh, no. I don’t tell them that. I tell them that the baby is going to die – and they are with me 100%.’”(4)

Similar cases have been reported in Australia, most notably the Baby M and Baby N cases in Melbourne. Baby M was born with severe spina bifida. “She was paralysed in the lower legs and would almost certainly not have been able to walk. She would have been doubly incontinent and would not have been able to have normal sexual function. It was possible she would be mentally retarded.”(5) Baby M was not treated surgically and was given the drugs paracetamol and phenobarbitone, and later morphine, dying 12 days after she was born.

Controversy surrounded the question of whether the decision not to treat was based on a judgement of the baby’s worth and “quality of life”, or a sound medical decision that treatment would be futile.

Bioethics professor Helga Kuhse commented, “There is little doubt that if this drug [phenobarbitone] had been administered to any child, who had not already been selected, on the basis of quality-of-life considerations, for a course of treatment that seemed to encourage death, there would have been a huge outcry …”.(6)

These questions were underlined when Baby N, who was treated by the same doctor in the same hospital, survived a similar recommendation of treatment when Baby N’s parents decided to insist that their baby be treated.(7)

Down Syndrome

Questions were also raised over the case of Christopher Derkacz, a 23 month-old Down syndrome child who lived in Perth. In 1979 Christopher was admitted to a Perth hospital with a bad case of croup. His foster parents left him in the intensive care unit overnight. After making inquiries the next morning they were told Christopher had died. A letter from the foster mother was read in the Australian Senate which made a number of disturbing claims.

“The [nursing] sisters took us back to a room and made us a cup of tea and I started crying and blaming myself for Christopher. One of the sisters went out to get some tranquillisers for me. The other sister said ‘how do you think we feel having had to stand by and do nothing’. I said, ‘Why couldn’t you do something to help him?’ and she replied ‘because we were ordered by the doctor not to’. I asked her ‘who ordered you not to do anything to help Christopher?’ and she replied that Doctor had.”

The foster mother recounted later discussions with hospital staff. “Doctor G kept harping on the fact that funds were limited for handicapped people and in his opinion things could only get worse as people weren’t having large families and that there was an aging population … Dr G said that Christopher and others like him could be just a drain on the taxpayer, costing more to keep than a person on the dole.”

The Senate was told that at the coronial inquest the coroner was reported to have said that “the hospital records do contain, however an alarming note: ‘no resus. (no E.C.M no intubation)’.” The words “no resus.” stand for no resuscitation.

The coroner was reported to have left the finding open because of lack of evidence. The two doctors and five nurses involved in the case were said to have given their names, addresses and occupations and refused to give further evidence.(8)

One Australian doctor has even suggested infanticide as an alternative to abortion in the case of aborting one child in a multiple pregnancy. Targeting a disabled unborn child in a multiple pregnancy involves the risk of aborting the other “normal” unborn child or children present. “In another era,” Dr Robert Jansen commented, “eugenic infanticide of the abnormal neonate was, or might again be, a safer option – safer, at least, for the normal sibling.”(9)

These cases have been recounted to show that there is cause to be concerned that these practices do not become established in the ACT.

Perspective of people with a disability

In November 1990 Disabled Peoples International (Australia) issued a critique of the National Health and Medical Research Council paper The Ethics of Limiting Life Sustaining Treatment. DPI said that having a disability is not inherently tragic and that it is presumptuous to assume that disabled people have a low quality of life and would be better off dead.

In a statement that could also be applied to the plight of disabled newborns and young children, DPI said that “it is a particular tragedy that people should feel that there is so little social support and assistance, and that disability is so appalling that they should seek an abortion lest they raise a ‘defective’ child. Indeed, we question a social system which is prepared to fund the elimination and screening of people with disabilities, yet is not prepared adequately to fund the personal care and education services we need to lead autonomous, happy and successful lives in the community.”

“There appears to be an implicit acceptance of the existing inadequate level of support services for people with severe disabilities which leads to various low quality of life situations which are needlessly handicapping people with disabilities.”

“In terms of both decisions to abort foetuses and those decisions to withdraw life sustaining treatment from many neonates with disabilities, much of the decision making is not necessarily to do with the ‘right to choose’. Rather, it is to do with our Society’s reluctance to accept people with disabilities as full and whole people who are not necessarily condemned to a defective and sub-standard life.”

“… severe disability does not necessarily mean a tragic existence. Rather, it is inadequate and inappropriate support services which handicap people with disabilities and serve to create a low quality of life. With appropriate support, people with disabilities can go on to lead happy and productive lives pursuing their choice of lifestyle.”(10)

Support for families with disabled children

The Australian Institute of Health and Welfare recently released the report Congenital Malformations Australia 1981-1992 which showed that the ACT experienced the lowest rate of birth defects in Australia. The report indicates that this may not be because of an increase in prenatal care or improvements in treatment of disability, but because of an increase in abortions relating to unborn children with disabilities.(11)

The Strategic Framework for Maternity Services in the ACT appears to be aiming to further entrench this negative view of disability by recommending the establishment of a position for a genetic counsellor and consideration of the need for a foetal investigation unit.(12)

It is important to ensure that the lower rate of women giving birth to children with disabilities are not discriminated against for “choosing” to have a child with a disability. It is easy to see a situation where women who have refused tests which discriminate against disability are then told they should meet the extra expenses of a disabled child without government support.

Rights of people with disabilities

Mr Justice Vincent in the Victorian Supreme Court in 1986 stated his understanding was that “… no parent, no doctor, no court, has any power to determine that the life of any child, however disabled that child may be, will be deliberately taken from it …”.(13)

The United Nations’ Declaration on the Rights of Disabled Persons states that “disabled persons have the inherent right to respect for their human dignity. Disabled persons, whatever the origin, nature and seriousness of their handicaps and disabilities, have the same fundamental rights as their fellow-citizens of the same age which implies first and foremost the right to enjoy a decent life, as normal and full as possible.”

In addition, the United Nations Declaration on the Rights of the Child states that “… the child, by reason of his physical and mental immaturity needs special safeguards and care, including appropriate legal protection, before as well as after birth.”

Discussion

The ACT Right to Life Association believes that the proper test to apply when dealing with newborn babies and young children who happen to have been born with a disability is not whether their life is worth living, but whether reasonable treatment can be applied which will allow the child to live.

It can never be acceptable for someone to make a decision to deliberately, by action or omission, cause the death of anyone under their care, let alone a newborn or young child. This is distinct from the withdrawal of burdensome or useless treatment.

It is not the role of doctors nor the role of the community to decide whether the life of a child will be worthwhile. Nor is it possible to decide whether that life will be worthwhile. As a community we must defend the worth of all people because they are persons, not because they are physically perfect or happy or because they do not meet any other criteria we may wish to set.

ACT Right to Life is concerned that every support should be given to parents of children who have disabilities in recognition of the special difficulties that these children and their parents have. It is also concerned that the increasing focus on the cost of health and other services may lead to disabled children being seen as a financial burden rather than an asset. Disabled people help our community to appreciate the value and diversity of the full human family.

Conclusion

The ACT Right to Life Association urges the Consultancy Team to affirm the value of all young children, whether they are disabled or not.

ACT Right to Life notes the needs of disabled children for occupational therapy, speech therapy and physiotherapy and understands that there are sometimes long waiting lists in the ACT for these services.

ACT Right to Life also understands that difficulties are sometimes experienced by parents in obtaining “special placements” in preschools for the siblings of disabled children. Disabled children require a great deal of attention from their parents. The ability to place their “able bodied” children in preschool takes some of the pressure off parents and enables them to devote more time to their disabled child or children.

It is important that there are as many services available as possible to address the special needs of disabled children and their parents. It is by recognising people’s needs and addressing them that we affirm people’s value as part of our society.

Postnatal depression

The ACT Right to Life Association shares the general community concern that women experiencing postnatal depression receive proper support and counselling. It is important to note that abortion and postnatal depression may be linked in some cases or that post abortion grief may be misdiagnosed as postnatal depression.(14)

A few years ago all ACT women who had had a baby received a visit from a baby health clinic nurse during their first week at home from hospital. This service was scrapped as a cost cutting measure, but was very important as a way of helping to detect postnatal depression.

While a system of prenatal classes for mothers-to-be is well established, it would be useful to extend these classes after the birth of the child to weekly parenting classes in the weeks after the mother and child leave hospital. This may also help in prevention and early detection of postnatal depression.

Post abortion grief

There is extensive literature to support the existence of grief following abortion as a form of post traumatic stress disorder.(15) Even a report favourable to abortion has recognised post abortion grief, though it claimed “… the underlying source of this distress in all these cases was that the women felt coerced into the decision to have the abortion”.(16)

Background

Developmental psychologist Dr Wanda Franz described post abortion grief as “… a complex of symptoms that is being proposed as a syndrome. It is believed … that post abortion syndrome [grief] is a variant of post traumatic stress disorder (PTSD).”

“There are some very specific characteristics associated with PTSD. They include long term reactions. That is, reactions that appear many years after the event. There is always a moral component of guilt involved in the traumatisation which can include something that is referred to as survivor syndrome – feeling guilty about being the one that survived a traumatic event. Another characteristic is to try to repress the experience, to try to forget it.”

“One of the things we found was that the average period of time from when the women had the abortion until they began to have major symptoms which caused them to seek out a support groups was about 5-7 years. That is, for 5-7 years the average woman in this sample was getting along, she thought, just fine. She didn’t feel she’d had a negative result from her abortion. Then these women began to have symptoms suddenly out of the blue …”.

One of the symptoms of post abortion grief “… is having problems being around children – fear of being around children – or sadness at being around children – difficulty being around other people after they have their babies – finding it stressful to talk to friends after they’ve delivered their children … There is a sense of helplessness, unforgiveness, anxiety, bitterness, loneliness, that are all a part of this condition.”(17)

Counselling and support

The ACT Right to Life Association is concerned to ensure that adequate support is available to women suffering from post abortion grief. Currently a number of services claim to offer counselling and support in this area.(18)

While the ACT Family Planning Association provides post abortion counselling, this is more usually with regard to recent abortions and is therefore unlikely to be of use to most women suffering post abortion grief. Given that the ACT Family Planning Association also owns and manages the ACT’s abortion clinic, it is unlikely women with post abortion grief will return to the source of their problems for counselling.(19)

Abortion Counselling Service also claims to offer post abortion counselling and information.(20)

The Pregnancy Support Service is the only ACT service with counsellors specially trained to counsel women experiencing post abortion grief.(21) As Heather Sertori, vice president of the Australian Federation of Pregnancy Support Services points out, “only pro-life people are going to be tuned in to the needs of a woman who is overcome by grief following an abortion. If family and friends as well as health professionals deny the ill-effects of abortion and suggest that there is nothing to worry about or grieve about, then a ‘conspiracy of silence’ isolates women and denies the reality of their feelings.”(22)

ACT Right to Life is concerned that this “conspiracy of silence” will extend to the ACT, with a recent ACT Health Department report expressing doubt about the existence of post abortion grief on the basis of its interpretation of one report which supported abortion.(23)

Crisis pregnancies

Karinya House for Mothers and Babies

ACT Right to Life Association has been pleased to offer support to a new committee which aims to raise money to establish the Karinya House for Mothers and Babies. This house is planned to be established within the next year and it is envisaged that the service will offer live-in support to six women with crisis pregnancies at any one time, both before and after the birth of their child.

Karinya House would be the only service of this kind in the ACT. The Anglican Diocese’s Bethel House, which had a broader purpose but did offer accomodation to some pregnant women, recently closed because of a cut in government funding.

Recommendations

1. That the proper test to apply when dealing with newborn babies and young children who happen to have been born with a disability is not whether their life is worth living, but whether reasonable treatment can be applied which will allow the child to live. Every support should be given to parents of children who have disabilities in recognition of the special difficulties that these children and their parents have.

2. That further measures designed for early detection of postnatal depression be considered, such as home visits by baby health clinic nurses and continuation of prenatal classes as parenting classes after the birth of the child, and that the possible links between postnatal depression and post abortion grief be investigated.

3. That the ACT Department of Health and Community Care investigate the extent of post abortion grief in the ACT and provide proper funding for counsellors trained to help women experiencing this grief.